Sunday, May 3, 2009

More Stuff…

Hooray for Saturday! It has been a crazy week for our family! Lucy had appointments every other day last week and the four kids had activities on the days that we had no medical appointments. I am mentally drained from our week of appointments. Not sure what to make of all of them, it appears that every one of Lucy’s doctors are just as baffled as we are. I feel like we are by far the experts on Lucy and we need to be able to relay the important information to everyone involved in her care. It is challenging to do this at times because it often seems that doctors are either rushed for time or are not very good at listening. A two minute assessment of Lucy does not even come close to getting an accurate description of what she is experiencing. Friday’s appointment with her metabolic doctor was frustrating as usual. Drew and I always leave those appointments asking one another what they understood from it. I’m always amazed at how different our interpretation of the same appointment can be. Basically, her metabolic doctor does not believe that we are going to find anything by doing the muscle biopsy, but said that we need to do it to rule things out. She has a tendency to say things that she shouldn’t! Drew and I did not come to the decision of doing the muscle biopsy easily. Every test that we have agreed to has not come without A LOT of thought! We are always asking ourselves what will we gain by doing “this test” , and is there a less invasive way we can achieve the same results. So we are again putting all of our preverbal eggs in one basket are are looking to Dr. Schoffner to give us his thoughts and opinions on our Lucy’s medical drama. This roller coaster of emotions has got to stop soon, I’m feeling very queasy!

Oh by the way, we had one more doctor's appointment this week that was not planned. On Wednesday afternoon when we returned home for being at CHOP all day, Sophie was not acting like her normal happy little self. Apparently, she was complaining of having a stomach ach most of the day and feel asleep on the floor at Beth’s house. When we all got home, I put Lucy down for a nap and sat down to watch a movie with the kids. Sophie asked for something to eat, since she apparently had nothing to eat all day I made her some leftover tortellini. She took a bite or two and threw up all over the floor. Now what I need to tell you is that Sophie struggles with chronic constipation, and yes she was indeed constipated! So, knowing that drastic measures needed to be taken I woke up Lucy and piled all the kids in the car to make it to walk-in hours at our pediatricians. Who knew that everyone and their sick kid was going to be there on Wednesday night? It was so busy that we had time to eat dinner at Subway while we waited for our turn. Thankfully, Drew took the other three kids home with him so that we would not have to expose anyone to the any number of germs that lurk in that office. Sophie required some drastic measures for relief, a dozen or so diaper changes, some serious mama love, and I am happy to report that we prevented a trip to DuPont! We are singing the praises of our Pediatrician once again as well as to the fact that Miralax is available over the counter! When you have four kids you can count on there never being a dull moment!

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FOR THE LOVE OF LUCY RESEARCH FUND

In loving memory of Lucy Grace Marlett, the bravest five-year-old girl we know. Please help us to find a cure for Mitochondrial Disease by clicking on the image and donating to the "For the Love of Lucy Research Fund" established by her family and the UMDF. Thank you for your love and support!

ENERGY FOR LIFE WALKATHON

UNITED MITOCHONDRIAL DISEASE FOUNDATION

We are All the Marletts, a family of six trying to live life to its fullest! My husband and I fell in love at a young age and dreamed of being married, having a family, and growing old together… Even though our life is what we hoped it would be, we could never have imagined what GOD had in store for us along the way. Being parents to four remarkable kiddos has proven to be MORE in every way! When our youngest was born, although we didn’t know it right away, we were given the privilege and challenge of raising a “special child”, a medically complex child. Since starting this blog, Lucy has been diagnosed with Mitochondrial Disease, a progressive degenerative disease of energy metabolism. Even though this is a blog about our life as a family, I write often about Lucy’s medical issues. If you care to read about the trials and tribulations of raising four children, the joys and hardships of our family life, the emotional roller coaster ride that raising a medically complex child puts one on, and the love that pours from my heart onto the pages of this blog then…welcome!